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Most people view employment as economic self-sufficiency and personal and professional identity. As Kiernan and Start say in their book, "Pathways to Employment. The concept of work and the place that work occupies in the social structure of the United States is central to the establishment of a sense of belonging for most adults.”
However, for many or most people with developmental disabilities, including cerebral palsy, the sense of belonging comes from holding a job is an experience that remains out of reach. Despite the rosy economic picture in Massachusetts, between 50 and 80 percent of people with developmental disabilities are unemployed, according to the Boston Office of Handicapped Affairs."
[The prepared statement of Larry Espling follows:]
TO: Chairman Major R. Owens, House Committee on Education and Labor,
Subcommittee on Select Education
FR: Larry Espling, Waltham, Massachusetts
RE: Testimony regarding H.R. 4498, "The Americans with Disabilities Act"
October 24, 1988
I am pleased to present the following materials in the hopes that my own experiences will help this committee and other members of Congress to understand the importance of passing legislation that will ensure basic civil rights for persons with disabilities in America. The following appeared in Changing Waltham, a newspaper in my home city; it is written by Ms. Susan Burkhart, based on her interview with me. The final column is about employment, and was written by myself and published in the same newspaper.
LARRY ESPLING has been a Waltham resident for nine years, he also happens to be a person with a disability. At three years of age, he was diagnosed as having cerebral palsy. When he was five, his parents took him to a specialty clinic. There they were told by the physician that their son was mentally retarded and would never learn to walk or talk He advised putting Larry In an insutution. Lucklly for Larry, he had parents who disregarded the doctor's advice. His mother, a teacher, and his father, a general store owner, chose to keep him at home and teach him themselves. Larry did leam to walk and talk, although both are done with some difficulty as are many funcdons Involving his hands.
In spite of his disabuity, Larry graduated from the University of Maine. Presque Isle, in 1978 with a degree in Behavioral Science. He has lived independently since moving to Waltham in 1979. A member of the National Board of Church and Society. United Method. ist Church, since 1984, he has traveled throughout the U.S. to attend board meetings. He has been a gubernatorial appointee to the Massachusetts Developmental Disabilities Council since 1985 and has served on the board of United Cerebral Palsy of Boston. He is also actively involved with St. John's Methodist Church in Watertown and Waltham Concerned Cluzens. Larry has worked as a program alde for mentally retarded individuals. taught pre-vocational skills to the multiply. disabled, worked as a camp counselor, and has done disability research for the Depart. ment of Employment Services and the Boston Omce of Handicapped Affairs.
S.B.: What are the major issues facing people with disabilities?
LE.: It depends on the disability. ru talk about people who went to high school and college. Everybody is unique, but the major problem is finding jobs. Transportation, public atutudes and housing can be problems. Housing is someumes difficult because of discrimination against the handicapped and because income is often low. There is a new bill before the Massachusetts legislature to prohibit discrimination in housing. but it hasn't passed yet.
S.B.: What in your own life are the major issues? LE.:
Jobs are the biggest problem i face-keeping a job. and finding the ideal job for me. The jobs I've had have been mostly with local or state government agencies. These jobs have tended to be temporary ones other because funding ran out or because they were only planned as short-term projects to begin with. It's very hard for someone with severe cerebral palsy to get a job in the private sector.
8.B.: How do you feel about being labeled as handicapped?
LE.: Handicapped means "hand in the cap.". or to beg. It's an old English expression. Another meaning is in golf. You give somcone a handicap so he or she can compete. I prefer the expression person with a disability. Everybody has a disability of some Idnd, even if it's just wearing glasses. If anyone with a disability would like to get together to talk about common problems or to start a group in Waltham for those with disabilities, please call me at (617) 647-0017. People can get very isolated, especially if they live alone.
S.B.: What are the most common misconceptions people have about those who are disabled?
L.E.: Some people think we are retarded. They don't know how to act. At the ethnic festival in Waltham in 1986, I wanted to buy a book on Lithuania at one of the booths. The person situng there sald. Why do you want this book? You can't read.' Another misconception is that if a person with cerebral palsy marties, any children will have C.P. I know of two C.P. couples with normal children. It's not hereditary.
S.B.: Are there unhelpful ways that people deal with those who are disabled?
L.E.: Many programs that work with the disabled can be harmful. They can be overprotective, in part because they get money from the government and don't want anyone to get hurt. They don't encourage people with C.P. to be Independent. I was lucky to grow up in a tiny town In Malne where there were no programs. My parents let me work. I helped in the small general store they owned, mowed the grass and did other yard work, shoveled snow. pued wood and brought it into the basement, and picked potatoes. . . . People say things someUmes as if you can't hear them. I was on a bus and two men near me sald. 'Hell be put away." I've had things like that happen before.
S.B.: How would you like to see things improve or change?
L.E.: In the last 20 years there's already been a big change. I don't think I could have gone to college before I did. Congress passed a bill in 1975 mandating that handicapped people be allowed to enter public schools. I would like to see more programs that encourage people who were bom with disabilities to become more independent.
Most people view employment as economic self-sufficiency and personal and professional identity. As Kiernan and Stark say in their book Pathways to Employment. The concept of work and the place that work occupies in the social structure of the United States is central to the establishment of a sense of belonging for most adults.' However, for many or most people with developmental disabilities, including cerebral palsy, the sense of belonging that comes from holding a job is an experience that remains out ol reach. Despite the rosy economic picture in Massachusetts, between 50 and 80 percent of people with developmental disabuides are un. employed, according to the Boston Omce of Handicapped Astairs.
The major reason for this high unemployment rate has been the perceptions of professional rehabilitation counselors, employers and some of the disabled themselves. They have felt that people with developmental disabilities couldn't hold a job in society. So those with cerebral palsy and other developmental disabiliues who want work in industry or business are denied the chance to prove themselves.
We have all heard about how tight the job market is in Massachusetts and how Wendy's is paying $5.00 an hour. This has led employers to begin looldng at the possibuty of hiring people with cerebral palsy or other disabilities. Fortu. nately, employers are discovering that biring people with developmental disabilities is highly cost effective and their fears that the insurance rates would go up as a result of hiring those people are unfounded.
Even though it is getting easier for people with developmental disabilities to get jobs, there is still a long way to go. We need new ideas for people who want to work. As I see it, this is the next new challenge for United Cerebral Palsy and other groups helping people who want to get a job in the economy. As Philip Johnston, Secretary of Human Services, has said. "I we can't give a job to every single person in Massa. · chusetts, no matter how disabled, then we ought to be embarrassed.
*Developmental disabilities are severe, chronic conditions which a person is born with or attains before his or her twenty-second birthday. These disabilities are mental, physical, or a combination of the iwo. They can limit function in such areas as self-care, nwbility and expressing oncell, amnnn nehere,
Larry Espling. Photo by Dick Crowley.
Mr. OWENS. Thank you very much.
STATEMENT OF NANCY HUSTED-JENSEN, CHAIRMAN, GOVER
NOR’S COMMISSION ON THE HANDICAPPED, PROVIDENCE, RI
Ms. HUSTED-JENSEN. Thank you. I am the chairman of the Rhode Island Governor's Commission on the Handicapped. And I have submitted testimony in writing to you, but there is an important issue I would like to speak on at this particular time.
It is an extremely important issue facing citizens with disabilities. The problem concerns voting. Since 1980, the Rhode Island Governor's Commission has registered citizens with disabilities to vote. In fact, this year, we registered 10,000 citizens. The Rhode Island constitution enfranchises every citizen over the age of 18 with the right to vote. The only exceptions are those people who are in prison for 1 year or more or those people who are deemed incompetent by the courts for whatever reason. Only the courts are empowered in Rhode Island to take away a person's right to vote.
The problem exists now that many social workers feel they also have the right to decide who can vote and who cannot vote. Recently, I participated in this year's voter registration. I was sworn in statewide registrar for the board of elections. I visited an association of retarded citizens work activities workshop. I had spoken to the director several days before and explained to him our procedure. And we invited residents from the group homes in the area to the center so they could hear my speech and decide whether or not they would like to participate in voting.
Upon arrival, I was met by only four people. Before I had come, I was told it would be groups of 15 to 18 people that I could talk to and then they would decide whether or not they wanted to be registered to vote.
I spoke to one of the social workers who came to me and explained to me that in the group homes, the people who were running the group homes, the social workers and the supervisors, were deciding who they deemed competent to vote and who they deemed not competent. They were not telling all the people about this opportunity to be registered.
Another problem arose when I took a registration card from that meeting to a local town board of canvassers. The voter has cerebral palsy and is blind. The clerk of the board of canvassers looked aghast as soon as I showed her the card and said to me, “Is that person competent? Look at that signature."
I guess the look on my face did not really please her and I protested. And she then announced to me that there was no such street that existed in that town. After I checked the post office, the person's personal identification in the telephone book, I went back and demanded the person be put on the voting roll. I knew when I left there, the person was not going to be put on the voting rolls. So, I went back to the Commission's office. I had the director of the Commission contact the Rhode Island Board of Elections and Senator Chaffe's office. After a lot of phone calls, the person was put on the board-on the voting list.
And I happen to be a real estate agent and one of my colleagues who was down at the town hall at the same time told me they had actually had to go out in the dumpster behind the town hall and dig out the registration card.
I cannot tell you, as a parent, how angry that made me. I have also been told by the Commission's director who was involved in Project Vote, in the past years people with disabilities have been turned away from the polling places after they have been registered to vote because they did not look competent. Thank you very much.
[The prepared statement of Nancy Husted-Jensen follows:]